Lower back pain/possible fibroids/mini-pill

[Littlemaple]

I would be grateful if anyone who’s experienced lower back pain due to fibroids or gynecology issues could share their experience. And anyone who’s been on the minipill with fibroids/gynae issues too.
I am late 40s and have been peri for at least 3 years and on HRT for 20months.
At the end of August I developed lower back pain, which I have had every day since, to differing degrees. It is worse in the mornings and made worse by standing and walking. The pain often radiates through to the front/lower pelvic area. I take painkillers and lie on the floor to relieve it. Hot water bottles help.
I have also been bleeding every day the past 8, and had frequent bleeding and spotting for many weeks prior to this. I have mild cramping.
I raised concerns with my GP and had a full range of blood tests taken 4 weeks ago- all clear. I had a pelvic exam last week, showing an ‘enlarged uterus’ and am awaiting an ultrasound scan, but this may takes a long time due to waiting list.
From my own research I think I might have fibroids, but the GP doubted they could cause the back pain. The appointment felt very rushed and possible causes were not explored. Can anyone share their own knowledge experience of such gynae issues?

The situation is clouded as I have been on the minipill for years, and this usually prevents all menstrual bleeding, until now. I have had spells in the past 3 years where I have stopped the minipill. During these spells I’ve had months of no periods and then horrendously long & heavy periods/bleeding including episodes of flooding and leaking at night in bed which I never experienced before.
My other symptoms are having to urinate very frequently- often every half hour and I am always up 2-3 times during the night. I have also gained quite a lot of weight, but put everything down to being peri. I have always had a bit of a weak bladder, (and a bit of a weak back), so I don’t know what’s what!
Any info shared would be great. I’m worried about this as I’m not sure I trust the blood tests and am truly fed up not being able to lead a full life anymore, due to the lower back pain and worry about it all. Many thanks in advance. I have deliberated on whether to post here asking for weeks! But I just can’t seem to find many relevant answers online as to whether the minipill can mask fibroid issues and cause such ongoing back pain so I thought I might ask!

Hi,
I hate to say it, but all to your issues could well be fibroid related.

They can cause bleeding, pain and weight gain. They can also press on the bladder and other organs.

I don't know anything about the mini pill, but I thought it stopped bleeding?

Fibroids can be horrid and cause a whole host of symptoms. An enlarged uterus is also a key characteristic of fibroids.

My advice, pay for an ultrasound ( if you can) Don't be fobbed off if they are small. They can grow big and make life hell.

All the best.

Hi @Sortmylifeout52 . I’m being referred on NHS for an ultrasound so hope it’s not too long a weight. Thanks for the advice- I have read so many stories in my research into this. I had no idea before now what awful pain and suffering women are expected to just put up with, my heart goes out to you all.

Post menopause I had bleeding (couldn’t be periods) and discomfort in the front of my body above my left hip (constipation-like). Spoke to GP at a smear test who did an internal, confirmed fibroids, sent me for an US. Had a hysterectomy.
Hope all is sorted out for you OP.

Thanks for replying Alissa. Glad you got it all sorted out and fully treated. Were you given options?
I keep reading about women being told to just put up with fibroids so that’s great they seemed to act on your swiftly. I don’t even know if the bleeding I get now is anything to do with periods or possibly fibroids. When they tested me for peri 2 years ago my FSH levels were 72, then 69 at the repeat test. This is apparently a post-meno level which has always confused me further!

I hope you get it sorted soon, OP.

Hi. I just wanted to update on my situation. I had an transvaginal ultrasound carried out privately last week as I was worried sick about my symptoms of sore pelvic area and lower back and I bled every single day in October (including v heavily towards end of the month - but I stopped taking the minipill mid-month which
may have increased the bleeding ) .
The sonographer didn’t find any fibroids, only a very small polyp. My uterus lining was 11mm thick (and this would have been day 6 if the heavy bleeding I had was a period).
I’m very worried now as I still have daily soreness to varying degrees every day, it’s now more in my pelvic area that lower back/pelvis.
My main worry is not knowing if I’m post or peri meno, as this uterus lining thickness seems to be a big concern from what I’ve read if I’m post-menopausal.
If anyone has ANY advice I’d much appreciate it. I have another week to go until my GP appointment. Since the scan I have convinced myself that I have either adenomyosis or uterus cancer, what else explains it?. However I know I need to remind myself that only last week I was certain I had fibroids and I got that one totally wrong.

I’m sorry, I have no experience to help you but I send my very best wishes. Can you not push for a earlier appointment with the GP? You shouldn’t have to go through another week of worry, stress and pain.

Thanks @Alissia I just took the earliest GP appointment I could get. They make you feel like you should just be thankful to get one at all. What’s even worse is it’s a bloody phone appointment! The last one was so rushed too.
I was so certain they would examine me at the scan and find a massive fibroid causing all the bother and then there would be an obvious solution and everything would be solved. Now I have no idea what will happen next! I will update once I know and I hope you are doing well.

Adenomyosis would explain the thickened uterus and endometriosis (particularly rectovaginal) would explain the lower back pain and bleeding. Could you ask for an MRI or a diagnostic laparoscopy?

@Littlemaple sorry to hijack your thread but can I ask if you feel any pain in the front of your pelvis or groin at all? I have similar symptoms to you but that's where I have the most pain and I'm also worried.

Can I ask for your whole life have you had heavy painful periods, do you have any bowel issues, ovulation pains? Sharp twisting or burning pains in your pelvic area?

I'm just going to to throw in that endometriosis would possibly be all of the above and by taking HRT the oestrogen aspect could have flared this up.

Adenomyosis would also potentially have been something you'd have known about most of your life with crippling period pains.

I hope you get some answers soon, I'm assuming they have fast tracked you? As you may have already googled your symptoms need to be checked and rule out womb or ovarian cancers.

I will add that I was recently diagnosed with stage 4 deep infiltrating, rectovaginal endometriosis, and adenomyosis. I had no idea. My periods were regular, three days long, and moderate flow. I didn’t have much pain, yes a bit uncomfortable but nothing leaving me in agony.

Looking back, the only symptoms I had were, runnier period poos (which my GP told me everyone got), one single episode of ‘javelin arse’ per period (which I thought was just wind and a consequence of having runnier poos), and occasionally a bit of pain down my leg, I just thought nothing of it!

hi @garlictwist I feel sore mainly where you get period pains, but also my lower back and radiating between. When it really started up at end of August I told the GP I suspected gynae issues, not just mechanical back pain. This was because when I’d had gynecological problems before (an ectopic) and it had caused lower back pain. It is worse after I stand or walk. What do you think may be wrong with you? Have you had any tests or examinations yet?

Hi @wellthisisakward I haven’t had a life of very heavy or painful periods at all. No ovulation pain or twisting pains. I have had Mirena and minipill since having children though and I now wonder if this has obscured something brewing in me! Over the past 3 years I’ve had spells where I stopped the minipill, mainly to see what stage I was at meno wise. Each time I’ve had irregular periods which were very heavy for me (some flooding & night time changes for first time in life etc) but I just thought this was what peri was like.
The sonographer said my ovaries looked fine, no issues there thankfully. I don’t have bowel issues either thankfully.
I haven’t been fast tracked by the GP , and I don’t know if she’s looked at the scan letter yet. My ca125 was fine in September and I’m confident now that it’s not ovarian cancer after the scan, but of course I am worried about uterine cancer. Thanks for taking your time to help!

Hi @Foon sorry to hear of your diagnosis. How did you find out you had endo and adenomyosis? How are you now?
At first I was thought it couldn’t be those as I thought all sufferers were in agony with them. Now I read symptoms are very variable for adenomyosis so I’m not sure. It’s odd when you say about legs, as I’ve had too things in recent weeks I haven’t had before- feeling like varicose vein going down my whole left leg instead of just my calf. Also, I used to do the yoga ‘butterfly’ pose, when you lie on back and open knees to make diamond shape, and it’s sore now. I just don’t know if all the stress (I’m quite anxious unfortunately) has me magnifying everything!
The GP said I had a bulky uterus on examination mid-October but that she’d felt worse. An MRI scan would be great if this continues but I don’t think many women get that for gynae issues as they are too expensive on the NHS.
I have a feeling I’m either going to get a painful procedure to remove the polyp and biopsy it, or I’ll be told to take a Mirena (not happening) and put up with it all! Will keep you posted.

We were trying to conceive but it wasn’t working. Even IVF didn’t work. We both had so many tests and scans and everything was reported to be ‘perfect.’ We were diagnosed with ‘unexplained infertility’ but that annoyed me because I see that not as a diagnosis, but as an absence of a diagnosis. I knew something clearly had to be the reason but they hadn’t found what it was yet.

I was under gynaecology at my hospital as they were the ones who had done the blood tests and scans. So I asked my consultant if he could do a laparoscopy for me. I didn’t have any pain etc so in a way I guess I was lucky he agreed, given waiting lists etc. Eight weeks later I had a laparoscopy and a diagnosis but he had to close me up without removing it as it was so advanced that I needed a specialist in a BGSE centre. I had an MRI which confirmed the extent of it and had my surgery with an BGSE specialist over the summer.

I cannot tell you how strange it was feeling an absence of lower back pain! I had the back pain every day but it was cyclical and got worse with my period. Does yours?

hi Foon, I’m so sorry to hear you’ve had fertility problems. Did things get resolved fertility wise? Are you ok now to try again?

I’ve always associated lower back pain with my own periods and gynecological problems, yes. I have had the pill, Mirena then millipill most of my adult life for contraception and these have all suppressed proper periods. I’m now wondering what would have happened otherwise. I was so worried about my sore back and spotting in Sept that I stopped the minipill and reduced my HRT in October to see what was going on naturally. I then got a dreadful heavy period with migraine, back pain, cramps the lot. To be honest my back hasn’t been as bad since so perhaps my body just needed to let it all out. But the sore pelvic are continues with milder backache. Endometrial lining was 11mm straight after the period so I’m wondering what if would have been just before. The joys of being female eh?!

Ah thank you. There's a slight irony in my current situation. Before the operation I was made to have a drug (Prostap) which put me into medical menopause. The argument the hospital made was that it would shrink the endometriosis and make the surgery easier. I really didn't want the drug. I am old on my last legs fertility wise and the idea of being put into menopause didn't sit well. I tried to explain to the consultants that other NHS trusts say that the drug shouldn't be used, as by shrinking the endo deposits it can mean it's not all fully seen and excised during the operation. Also, there is no double blind research that proves the drug leads to better pos-operative outcomes, and there is a risk of terrible side effects for women. However my wishes were to no avail and I was told, "no drug, no operation."

Unfortunately for me, I did have a side effect, in that the drug put my ovaries to sleep and months after the injection should have worn off, they haven't woken back up again. So it's a terrible irony in that I underwent this surgery to improve my fertility and yet the drug they made me have, has rendered me infertile.

Unfortunately, the hormone (TSH) that tells my system to wake up is testing as virtually undetectable and there is no drug that can be given to increase it. One consultant thinks I need to keep waiting (but time is really of the essence for me), one consultant thinks I need to go on the combined pill as the oestrogen will give my own system a nudge to produce its own oestrogen again, and one consultant wants to give me a 'progesterone challenge' to induce a bleed and then see if my body recognises it as a wake up call. I am going for another scan and blood test next week and then will decide what to do.

It's a terrible situation, and one I never thought I would be in. To answer your question - yes, if my cycle had come back then other than my age I have been told there is no reason we couldn't conceive naturally. The only issue being egg quality at my age.

(Sorry for the long post but if even one woman in my situation reads this in the future it will have been worth it)

Oh Foon, I’m so sorry to read of your troubles. My heart goes out to you. I really hope they get your ovaries kicked back into action and very soon too if time is not on your side. You must feel so frustrated by your treatment, especially after raising your own concerns.
I was trying to find an article I read in the past week (I have several library books out on women’s health & have googled tonnes of articles) but I can’t find it. It was basically a doctor saying they had to treat a woman (for cancer I think) with medicine which stopped her ovaries working and made her infertile, but a couple of years later they started working again themselves and she had a baby. I know that’s not hugely helpful as no detail, but it shows there is hope. Let us know how you get on next week.
(Also, it is really good you have posted your story here for others, as it’s so good to find real life experiences to relate to. The generic vague advice on so many sites is hopeless).

Thanks @Littlemaple I think it may be the same drug by the sounds of it. I’ll let you know how I get on?

Anyway… how about you? What do you think your next steps can be to get to the bottom of everything?

Just make sure other stuff is ruled out.

I thought I was perimeno with abdominal pain - ref'd for ultrasound- cysts on ovary. Still doesn't explain my other pain. Now had an urgent referral for bowel.

Unfortunately perimeno is a red herring sometimes. So if the pain is in your back, get your back checked out.

Do let us know how you get on @Foon. My GP appointment is next week too. Will see what she says. I’d be happy if they say they will investigate further (if there’s an anesthetic involved!). I will not be happy if they suggest Merina. I will be very upset if they stop my HRT!!
Hi @declutteringmymind thanks so much for that advice, I will press for a diagnosis and treatment as being sore is so debilitating and worrying, isn’t it? I feel im getting unhealthier every week just from the inactivity and worry!
I hope all is ok with you. What are they going to do and how quick is urgent? Do you feel that your pain is your bowel?

Hi @Foon just checking to see if you’ve had your scan yet, as this week is nearly up.
I had my GP appointment and I am being referred to a gynecology for investigation.
I hope you are doing ok?

Most professionals are born lierers. Not that that will bother the lier of the receptionist.

How kind of you to think of me. I am so pleased you are being referred for further investigations.

I am astonished but very pleased to say that my scan and blood test showed that I had ovulated! Perhaps even on the very day I was posting on here so upset. So my period should arrive in a week or so and then all being well things will be back to normal and DH and I can try naturally for a while!

Obviously I am pleased that my cycle has come back but I do still resent the fact that I was made medically infertile for seven months at my age. I think the hospital took a ‘one size fits all’ approach rather than looking at my age, hormone profile, and the fact fertility is a concern. But I shall leave that in the past now. It can’t be changed.

Please do come back and update us of your progress 🫂😊